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By the way all I think I mentioned elsewhere that I had a weird feeling in my back and I wasn't sure if this was another MND thing but the current thinking is that I have got some sort of one-sided urinary tract infection so I'm taking antibiotics with my riluzole at the moment.

Is it a manual wheelchair or were they 'generous' enough to supply you with the electric variety? - I only ask because we are supposed to be supplied with an electric wheelchair once 'they' have deemed us to be 'worthy' of one

(As you can probably tell, my experience of 'wheelchair services' could be better - but I expect this is something that varies according to where you live - as is the case with many different services, probably a 'postcode lottery')

Best wishes to you and your wife,

Kayleigh x

Last edited by Kayleigh; 8th January 2019 at 21:04.

We are a fabulous forum family - the precious bond we all share is powerful and strong!

You don't have to "figure things out" yourself, or at least you shouldn't have to!

You might find using the Nippy in Pressure Support mode is better, as it reduces the effort on your muscles during both breathing phases, augmenting gas exchange.

The biphasic settings are recommended in ALS - an IPAP for inspiration and an EPAP for expiration - saving your respiratory muscles extra effort (that's ts aim after all!) Other factors to consider are spontaneous breathing and trigger breaths.

My initial settings were IPAP 10 & EPAP 4, but I was a long way off FVC of 100%.

IPPV = Intermittent positive pressure ventilation, is a standard, controlled mode of ventilation (does not require any spontaneous respiratory effort from the user), and is not synchronised with user's respiratory effort.